So I’ve had random people find out I have epilepsy and then tell me how inspiring I am for living my (normal) life. I would consider having epilepsy (in my case, as it is medically controllable) more of an inconvenience and an occasional killjoy than a nearly insurmountable chronic disability. However, I have had close friends and family tell me that they are sorry I have suffered since childhood with major depression and debilitating anxiety, but that everyone feels bad sometimes and I really need to just learn how to cope like everyone else. My guess is because even people who haven’t had seizures can see the physical harm, but everyone has felt sad or worried before, so they assume it’s the same thing and I am just being dramatic, and even close friends and family don’t see the real danger of potentially fatal mental disorders until the coroner rules it a suicide.
Additionally, there is the misconception that I have no control over my seizures, but all this (frankly, bullshit) messaging about how no matter what life throws at you, it’s up to you to make the decision to be happy. Let me tell you this – I can take a pill twice a day and not have any seizures. That isn’t true for everyone with epilepsy, so I consider myself lucky. I also consider myself a complete idiot when I forget to take a dose and end up in the ER, having yet another dislocated shoulder reduced. All of that pain is preventable. I haven’t yet found a pill or motto or diet or mantra or crystal or any other thing that allows me to prevent all those days spent internally fighting myself, crying in bed or on the floor or in the shower (if I can make it that far), hysterical over something I can’t name, fearful or hopeless about something that may or may not happen 20 years from now, or just quietly immobile because the weight of… something… is too much to face.
Yet, people are sympathetic when they hear about my ER visits. They almost never mention my medicine. Family and friends drop what they are doing to come visit me in the hospital because it is an emergency. Yet, when I call my mother or partner or friend and tell them I just really need someone with me because I don’t feel stable, that is not an emergency. I am just being too emotional. I should take a bath. I should read something. I should listen to music. All I want to do is crawl out of the confines of my skin and join the unconscious ether again, and it is everything I can do not to do it some days. I am not going to die (probably) from a seizure, but people die from depression and other mental illnesses every day.
I struggle more with depression and anxiety (lifelong side effects of another underlying condition) than with epilepsy.
Please, do the world and your friends and family a favor. Stop neglecting others because you can’t always see their pain. My inward pain is just as real, and far worse, than my physical pain from seizures or dislocations. If you would sit with them in the hospital then you can sit with them on the floor, or bed, or couch. If you would check up after surgery and see if they need anything, do the same if they share an invisible illness with you. Believe them.
And if you have a mental illness or ever feel unsafe with yourself, please tell someone. Keep telling until you find someone who will listen. Suicidal isn’t a bad word. If you feel compelled to end your life, get help. It can be hard to find, but it exists.
That’s it. Thanks.
***Note: At the time of posting, I am not currently suicidal, nor have I been since fall/winter of 2012***